____________________________________________________________________________________________________________________I thank the gentleman [referring to Rep. Kucinich, who has just yielded back the floor].

On all sides, I now ask unanimous consent that our colleague from New Jersey, Mr. Smith, be allowed to participate in today’s hearing. Without objection, so ordered. I will announce that if any individuals would like to be in a little more comfortable situation, we do have an overflow room, so just let our staff know, they’d make sure that, if they gave up their seat here, that they’d be able to be in the overflow room. It may be more comfortable for some of our guests.

I now turn to our first panel. The distinguished Dr. Alan Guttmacher is director of the Eunice Shriver National Institute of Child Health and Human Development at the National Institutes of Health --- and I actually knew the namesake of your organization, during her time --- and Dr. Coleen Boyle is director of the NationalCenter on Birth Defects and Developmental Disabilities at the CDC.

With that, pursuant to the requirements and rules of this Committee, would you please rise to take the oath

(pauses while Drs. Guttmacher and Boyle stand up)

Raise your right hands.

Do you both solemnly swear or affirm that the testimony you are about to give will be the truth, the whole truth, and nothing but the truth?

(Drs. Guttmacher and Boyle nod their heads)

Thanks. Please be seated, and let the record indicate both witnesses answered in the affirmative.

You are important witnesses and we will not stop you if you go slightly over five minutes, but we do have a large second panel and we would ask that you bear in mind that all of your opening statements and additional extraneous material you may choose to submit to us will be placed in the record, so if you abbreviate or go off-message, it doesn’t change the official record for you. And, with that, Dr. Guttmacher, you are recognized._____________________________________________________________________________________________________________________

I am also a pediatrician and medical geneticist, and a member of the Interagency Autism Coordinating Committee, or IACC, re-authorized most recently by the Combating Autism Reauthorization Act of 2011.

Let me thank the Congress for its continued support of research and other activities regarding autism spectrum disorders. That support has made possible remarkable advances in autism research and helped to better identify and meet the needs of people with ASD and their families.

ASD includes diverse conditions that share distinctive styles of, or impairments in, communication skills and social interactions, as well as restricted, repetitive, or stereotyped behaviors. The combination and degree of impairments vary, creating an array of conditions that range from what many would see as normal to significantly disabling. Two decades ago, ASD was thought rare. Today, with CDC’s latest prevalence estimates, it is a national health priority.The IACC plays a pivotal role in bringing together federal agencies, nonprofit organizations, and the public to identify priorities and strategies to address them. It includes individuals on the autism spectrum, parents of children and adults with ASD, other advocates, researchers and service providers, and officials from federal agencies. The IACC welcomes public comment at all full committee meetings, and regularly invites written public comments and holds town halls. Thus, a diversity of perspectives on ASD informs IACC activities and recommendations. It is a committed group; while the law requires two meetings a year, the committee and its subcommittees meet as many as seventeen times a year. The law charges the IACC to update a strategic plan annually. We are drafting --- as always, with autism community input --- a 2012 update that includes the latest advances, remaining gaps, and emerging needs in autism research. The plan encompasses priorities from fundamental biology to services across the life span.

Over the past decade, autism research funding has grown substantially. The NIH leads federal research in ASD, investing $169 million in fiscal year 2011, three times more than ten years ago. In 2009 and 2010, $122 million in additional American Recovery and Reinvestment Act funds were also invested.

As Congress has emphasized, early diagnosis and intervention are critical. This year, NIH-funded researchers identified brain pattern aberrations as early as six months of age in infants who went on to develop autism, the earliest such changes ever recorded in autism, and one of a number of recent findings which suggest that the factors causing autism may operate very early in development. Last year, researchers demonstrated that doctors’ offices can use a short questionnaire to screen inexpensively for ASD at the one-year well-child visit. Another promising diagnostic tool, a one-minute test that detects eye-gaze patterns specific to autism, had nearly 100% specificity in infants as young as fourteen months.

But early diagnosis is valuable only if effective interventions are available. Recent ASD trials have validated early interventions to improve health outcomes and quality of life. For instance, a recent behavioral intervention study showed improved IQ, language, and social development in young children, and progress is also being made on interventions for adults. A recent study showed, for instance, that for the many adults with ASD who have impaired ability to recognize faces, a computerized training program improved facial-recognition skills.Many recent advances have come from NIH's Autism Centers for Excellence program, which currently supports nine centers and networks across the country, with two additional awards expected in 2013. The research covers a variety of topics aligned with the IACC strategic plan, including nonverbal ASD, genetic and environmental risk factors, potential treatments, and determining why ASD is five times more common among boys.We do not know the causes of ASD, but recent findings highlight the need to focus on both environment and genetics. NIH and CDC established large research networks to collect extensive data on environmental exposures and health outcomes, and conduct powerful analyses to identify factors that contribute to autism. Those networks explore possible causative factors in the environment before, during, and after pregnancy. Just this week, one of these networks published a study that suggests prenatal and early-life exposure to car emissions is associated with autism.On the services front, HRSA has invested substantially in improving physical and behavioral health of people with ASD, practitioner training and service provision. In fiscal year 2012, Congress appropriated over $47 million to HRSA for autism and other developmental disorders. This supports 43 interdisciplinary training programs which provide services and training to 41 states, and include autism intervention projects for underserved populations. Federal agencies also use public-private partnerships to maximize our work, such as NIH’s National Database for Autism Research, which coordinates with other autism data repositories to enhance researchers’ access to data.Programs like these, that involve collaboration with patients and families, bring together hundreds of researchers and clinicians with tens of thousands of people nationwide affected by ASD. The Administration on Intellectual and Developmental Disabilities, with help from several nonprofit organizations, supports the Autism Now project, offering a call center, web-based clearinghouse for resources and twice-weekly autism webinars. The NIH-supported Association for University Centers on Disabilities is improving early identification of autism through 25 Act Early ambassadors who train doctors in identifying, diagnosing, and managing ASD.In conclusion, since the establishment of the IACC, a wide variety of research, service, and education expertise have come to bear on autism. Research is rapidly translating into practical tools for use in the clinic and the community. Federal agencies are coordinating efforts to identify best practices to support the lifelong health, education and employment needs of people on the spectrum.Thank you for this opportunity to provide testimony on such an important topic. _____________________________________________________________________________________________________________________(end transcript)You can see the Strategic Plan he talks about here. It is structured as a list of seven questions for the IACC to use as guiding principles in deciding which research projects to fund. In each annual update to the Strategic Plan, they list what research has been done relating to each question, and what gaps remain in their knowledge.These are the seven questions, with a little more explanation on the ones I think are vague or overbroad:1) When Should I Be Concerned? - developing new diagnostic tools, especially for use at younger ages, and improving existing ones2) How Can I Understand What Is Happening? - fundamental biology research, including topics like brain structure, brain activity, gene expression, animal models, the role of glial cells, and how the various genetic mutations that have been found to be associated with autism affect brain development and/or synapse formation3) What Caused This to Happen and Can It Be Prevented? - looking for factors that predispose a person to develop autism: genes, environmental exposures, characteristics of the parents that aren't necessarily genetic (e.g., age, epigenetics)4) Which Treatments and Interventions Will Help? - evaluating early behavioral interventions, various kinds of training or therapy for older children (e.g., cognitive behavior therapy**, social skills training, mindfulness training), and of course drugs (blargh!)5) Where Can I Turn for Services? - looking at disparities in access to diagnostic services and therapies, and at quality-of-life issues like wandering, restraint and seclusion***, and caregiver stresses6) What Does the Future Hold, Especially for Adults? - developing diagnostic tools for adults, determining prevalence of autism among adults, and looking at quality of life among autistic adults7) What Other Infrastructure and Surveillance Needs Must Be Met? - trying to make it easier to do the kind of research they want, by making it easier for different research teams working on similar problems to pool dataAlso, looking at the bibliography they have at the bottom of this page, it looks like the study he mentions dealing with "prenatal and early-life exposure to car emissions" is this one.*I learned a new word. It means "not autistic."**I am confused about that; I thought cognitive behavior therapy was what you used to try and overcome distressing, irrational or self-defeating thoughts, like you get when you have OCD or depression. I'm not sure how it could be useful to an autistic child, unless maybe it's supposed to help them overcome their need for rigid routines or deal with sensory overload better. I could see either or both of those working, maybe.***I'm immensely happy that people in the government know that restraint and seclusion in schools is a problem! All this time I'd been thinking it was just activists and parents who knew that and were fighting against it.

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A Portrait of the Autist

I'm a recent KU graduate with degrees in biochemistry and English lit. I'm also on the autism spectrum, having been diagnosed with PDD-NOS at age 5. It's quite likely that, were I to be seen now, I'd be diagnosed with Asperger syndrome.
I write about a lot of things, which include but are not limited to: autism research, psychology, neuroscience, feminism, autism advocacy/neurodiversity, autism in literature, and broad, sweeping cultural critique. I also draw, paint and take the occasional random picture.
Spam and abusive comments meet the icy-cold fury of my deleting finger.

Recommended Reading

These are books I've read that I thought worthy of recommendation; it's not meant to be an exhaustive reading list in any topic. I will add to it as I discover more books I think people need to read.

Because I believe that true freedom of thought is incompatible with a world where all our books, opinions, news and entertainment comes from the same handful of corporations, I have linked to independent bookstores whenever I could.